Kidney Donation Update – Mission Accomplished

It’s been just about a month now since I went in for surgery and, for the most part, all is well. It has however been an exhausting process and one pretty riddled with shitty luck and some disappointments.

First things first though, my kidney donation was a success. Last I heard – and probably all I will hear – is that my kidney was deep inside some lucky soul who to their (I’m guessing) joy is now pissing liberally all over the place thanks to a small lump of my guts. So, that’s a nice thing. Unfortunately it’s taken a month for me to get a real chance to sit down and think about what’s happened and what I’ve done because the intervening weeks have been some pretty brutal ones.

Post surgery my recovery was, seemingly, all good. When you wake up you’re straight onto the strong stuff, a Fentanyl drip in my case with instructions to mash the button as much as you like to deal with the pain, which I did. From there it’s a few days of blood tests, catheters, nurses walking you around like a geriatric toddler and various people expressing far too much interest in your urine and bowel movements. All on a ward where people are in various states of despair and where sleep, when not assisted by heavy opiates, is a luxury. All to be expected though and that early stage was exhausting, uncomfortable and just fine with me.

I was checked out of the ward quickly enough and went off to stay with family for a few days before heading back to my own place. All good really, my stomach was a mess, getting up was an ordeal and walking further than the kitchen wiped me out but again, that’s what you’re signing up for in the aftermath of a pretty major surgery. Unfortunately it was during that period that the bad news for this last month started to mount up in earnest though. My Uncle, who’d, ironically, had surgery on the exact same day as me in a different hospital and for entirely different reasons passed away. His surgery was successful but post-op complications got him and, well, that was that. I haven’t got much to say about that really, but it did make it harder for my family and my being crooked in the middle of it obviously didn’t make things any better. But such is life.

The next bit of bad news came when, after being back at my own place for a few days, ambling around in the nip and being generally useless in a quiet and comfortable way I started to get hit with a lot of pain. My initial assumption was that it was routine post op issues – I’d been warned about gas and fluid build ups that could do some damage, as well as the basic pain entailed in having someone cut through your stomach and start tearing bits out. So with that in mind I left it 24 hours or so before I called into the hospital, fortunately a delay that didn’t do any harm but which certainly didn’t help either. At any rate the second I called into the ward I’d been on, one specialising in transplants, they told me to come in and get checked out so I did. As a quick word to the wise should you ever find yourself in a similar situation – if you’ve got drugs at home, take them with you. Yes, hospitals have a shitload of donkey strength pain meds on hand but until they check you in, you can’t have them. And if you find yourself waiting 3 hours for a scan while you’re in a lot of pain then you really are going to want something. That was a bastard of a day, although oddly enough not the worst pain I’ve ever been in. In fact it was maybe the one time in my life I’ve been thankful for Cluster Headaches because when it comes to giving you a frame of reference for suffering they’re a definite 10 and even as I was completely fucked I could at least say it could be worse.

So, once the scan was done they got me straight onto the ward and hooked up to the good stuff again which was a little slice of heaven in comparison to what had come before. Next up came the initial diagnosis which was appendicitis. What’s that got to do with your kidney? Nothing. Absolutely nothing. It also had nothing to do with me, because that’s not what the issue was although they got as far as the porter wheeling me off for surgery to have my appendix whipped out before the doctors realised that much. Apparently the scans weren’t definite and, after arguing amongst themselves, they’d revised the diagnosis to one of Colitis, an inflammation of the colon and appendix. Something which taking my appendix would have done nothing to solve, although to be honest I’d have been happy enough just to have the thing out on the off chance it helped.

The next few days were hard ones. A hospital ward can be a tough place to be at the best of times, such as they are, but when you’re not entirely sure what’s going on and they’re not entirely sure how to treat it the hours can go by very slowly. Add onto that the people around you who can’t sleep because of their own crippling (and very audible) pain, the ones who have no control of their functions, the snorers, the dickheads who view headphones as optional (seriously, take them in with you if it ever comes up, people listening to shit at full volume deserve to suffer) and the fact that you’ll be woken up at least 3 times a night for obs, blood samples or just because something is beeping in your vicinity and the whole experience ground me down to the bone. I was nil by mouth for most of that stay and my initial doctor was, well, someone I didn’t get along with, to put it diplomatically. I think over the course of my second stay on the ward – about 5 days – I went through every surgeon, doctor and consultant in the hospital, each of them guessing at what the issue was and how best to treat it. Hence the nil by mouth bit, even once they’d put me on antibiotics they still weren’t sure if they’d want to operate so they kept their options open. A cautious approach for them, a miserable one for me and certainly the toughest period I’ve had during all of this but there y’go.

Eventually they committed to the Colitis diagnosis which also had fuck all to do with donating a kidney, in theory at least. My assumption was that an infection got in during surgery but the odds of Colitis hitting in such close proximity to a donation are infinitesimally small apparently so I can’t testify to that and the doctors certainly weren’t willing to say anything decisive. At any rate they discharged me eventually, the pain was still present but once they’d decided against surgery there wasn’t much reason to keep me in and I didn’t make a great secret of how much I hated being on the ward. And I should add that that’s not a slight to anyone working there, the nurses and the rest were grand but a miserable place is a miserable place nonetheless. Plus there’s a sort of infantilisation that takes over when you’re in hospital for any length of time. You can hear it in peoples voices, the shift from regular, independent human being to a slightly cloying, pleading tone as things get harder and nursing staff especially become not just people who are doing a practical job but almost emotional carers. It’s a reliance that I dislike to be honest, I find sympathy hard to deal with and pain especially is something I’m far more comfortable managing by myself rather than with an attentive audience.

Anyway, since I got out things have been getting substantially better. There was a day where I had to go back in as the pain flared back up again and they did say it was 50/50 on whether they re-admitted me but I was quick to refuse the offer and head home on the promise that I’d be liberal with the pain meds and not push myself too far. Since then though I’ve had more blood tests and the Colitis has cleared up, so all my physical problems now are just standard recovery stuff. Sore muscles, limited energy, no strength etc. Blissfully predictable really, not enjoyable, but entirely manageable and my narcotics regime has gone from prescribed opiates and fists full of pills to Guinness and naps.

The only other downside – and bad news comes in threes they say – is that my loss of earnings claim was largely ignored and I got a little over half of what I applied for. There are reasons for this, not good ones in my opinion, but reasons nonetheless. I can’t deny that it’s pissed me off a fair bit, claims should be processed before surgery or evidence should at least be rejected in advance instead of leaving people in recovery having to worry about it. If I had the energy I’d argue the point but at this stage I genuinely can’t face the prospect of back and forth discussions with some NHS finance department dickhead who’s unlikely to have much, if any, sympathy for me. Besides, being broke is never a novelty and I’ll get by one way or another. To anyone considering donating though I’d say be a bit more demanding about financial stuff before going under the knife, it’s really not a system geared towards looking after people with limited resources. Anyway, beyond leaving a bit of a bad taste I’m not dwelling too much on that aspect. Donating was obviously never about the money and even if things are harder due to this I’m still proud of what I’ve done and that’s what I want to focus on, nothing else.

I am proud too. Over the last month the act of donating has been obscured by a lot of other stuff and with the complications and set backs I’ve had my share of shitty luck but, frankly, fuck that. I’m happy with what I’ve done, I hope the recipient is too and that’s what matters here. The rest will pass and the good part will remain. As always I wouldn’t suggest anyone else donate a kidney – it’s an entirely personal choice and I don’t think anyone should be proactively advocating for it – but I can say that even with all the hard parts I don’t regret my choice at all… So, there y’go.

P.S. Definitely not recommending living donation for anyone (unless they want to do it) but you can register for normal, after-death donation here or to give blood here – which you should definitely do if you can.

P.P.S There’s a lot more I’d like to say, lots of thoughts about the process and details that might be helpful to anyone else considering an altruistic (or any) donation but today I just wanted to get all the practical stuff down really. A bit more time, a bit more rest and I’ll give some more thoughts.

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